WHERE DO I STAND BY THE BED
It was time to disconnect by Aunt Essie from the machines that were helping her feign life. Nine of us were gathered, including Essie’s daughter Miriam. As we waited for the doctor, we engaged in a restless choreography—forming in clusters in Essie’s cluttered room, pacing the hallways when Miriam asked for time alone with her mother, leaning against walls, sitting with eyes staring sightless or with heads lowered into palms, making unnecessary trips to the bathroom or to make a phone call to sip fresher air into our lungs. When the doctor arrived to remove the breathing tube and still any alarms, the nine of us rimmed Essie’s bed. My daughter Frannie ended up across from me and I went to her, leaving my Aunt Alice and my cousin Bobby alone on one side, unbalancing the raft of our grief. “What do I do now,” Miriam asked when it was all over.
Caregivers and family members are instructed in so many medical functions. During Nadia’s treatment, I dispensed medicines, gave shots, suctioned her trache, cleaned the dressing around her central IV. I knew what to do if she ran a fever, felt nauseated, or became itchy from the morphine. But after her surgery to rebuild her jaw using a bone from her leg, when the tubes and catheters that protruded from her body seemed to form a barrier to my touch, there was no one to give me the steps to the dance I would have to perform for the next two weeks. Where should I stand by her bed? At her right foot and leg which I could stroke without causing pain? At her head where I could place my hand on her bald scalp? By her ear where I could whisper soothing words? By her side where I could hold the one hand that didn’t have a peripheral IV? How was I supposed to respond to her anger? Should I flee her side when she threw whatever she could reach in frustration, or should I stay close to absorb her fury? Whom do I allow, or want, to come visit? What do I say to the sorrowful faces around me? Is that even my job, to make others feel better?
Write about a time when the choreography of caregiving was unknown to you. Choose a specific scene and make it vivid by using all of your senses. What was your challenge? What was being asked of you that you weren’t sure how to provide? Did you even know what was being asked of you? If you were the patient, write about a time when you felt the insecurity of those around you. Describe their actions and how you responded. Did you help guide those trying to help you? Did you resent their inability to know on their own?